tingling from head to toe .

[fion]

once again body going mad,tingling,dizziness,blurred and floaters in vision,could burst into tears .been living like this for over 2 years now and don't think I can take much more.im sick of being told its anxiety,was diagnosed hypo 2 years ago ,tsh 130 started 75mg levo and have never been myself since sometimes I think with a tsh that high I may have done some permanent damage ,got my aunt to do blood sugar fluctuate between 3.9 and 10 so they seem ok .x sick tired depressed thought id be better by now x

[Hidden]

fion, I wish you well. Take a look at youtube.com/watch?v=UbXPSFe...(Not working as expected?)

wyn

[cein in reply to Hidden]

Like

[dylansmum]

I think you may not be taking a high enough dosage of Levothyroxine. Have you had a blood test recently? I am no expert, but I recently went on holiday, and realised I was only taking 25mgs of levo instead of 100mgs! I am prescribed 125mgs, but I decided I would just take 100mg with me. I realised I had picked up the wrong packet and had just been taking the 25mgs. After a couple of days I felt very unwell, with a lot of the symptoms you have experienced. I was sooo tired and very dizzy and unsteady on my feet, also with blurred vision, and my eyes not focusing properly. Fortunately my mother also on levo lent me some of her tablets, and I felt better within a day. This could be your problem, I hope you feel better soon x

[fion]

thanx all,its just a roller coaster ride ,,,, not good x

[Clarebear]

Hi Fion - please could you post your latest test results? It does sound like you may need some more T4 or even some T3 - those symptoms sound like my under-medication ones to me too. Xx

[hazeljane]

Hi Fion,

I'm a recently diagnosed hypo and I am experiencing all the symptoms you are. I was only diagnosed in march with a tsh greater then 150 and t4 of 2.5....over the last number of weeks I've battled with everything. My body feels like its shutting down. I get these "episodes" where my body shakes, I feel as if im going to collapse, tingling in my hands and face, blurry vision....the list is endless =/ it all got too much for me, the constant feeling of "jumping out of bed too quickly" I ended up in a&e last Sunday. Like you, they told me it was anxiety...i explained that yes I do get anxious / panicked as a result of the feelings I am having...if you get any results back I would be curious to see what they say. I have to see an Endo the end of the month. I wish neither of us felt like this but im glad im not the only one. Its defo something to do with being hypo or the Levo - could it be a reaction???? Either way I never felt like this before I started taking levo and I am not an anxious person normally this condition can be more debilitating then I ever imagined. Chin up, we'll get there =)

[fion in reply to hazeljane]

I was never anxious before starting levo years ago ,ive been in a&e so many times with the same result anxiety.have also seen endo who also said it couldn't be meds its anxiety,i really really feel for you ,never would have thought this illness could be so bad xx take care .

[greygoose]

Flon, don't worry about the high TSH having done permenant damage. The TSH doesn't do anything except stimulate the thyroid, and that was already sick or the TSH wouldn't have been that high. So get that idea right out of your head and concentrate on the idea that you more than likely just need an increase in levo.

Are you still just on 75 mcg? If so then you definately need an increase. 75 is a very, very low dose and should have been increased six weeks after you started it. Your symptoms are all hypo - even the anxiety - so go to your doctor and insist on a blood test for TSH, FT4 and FT3 (although you might not get the FT3) and don't take no for an answer. Because even anxiety has a cause, and it's his job to damn well find out what the cause is! (More than likely hypo.)

Hugs, Grey

[Clarebear]

The feelings of anxiety and horrible tingling remind me of my horrible symptoms before starting treatment and on thyroxine. Here is a link to one of my early questions when I was feeling really bad. My endo told me it was not thyroid related... :

thyroiduk.healthunlocked.co...

The good news is that I didn't listen to him and got my anwers here instead. I am now feeling great My endo does now agree that it was my thyroid all along but is amazed that Armour has been the answer for me ( he had never prescribed it before).

Please can you post your latest test results here? 75mcg sounds a very small a dose, bearing in mind your high TSH on diagnosis. Also it would be really good to get your fT3 tested, as it is my belief that for me, getting this up to near to the top of the range, has been the answer. xxx

[fion]

I was taking 20 t3,1 grain erfa,and 50 levo,ran out of erfa so put levo up to 100 ,I have got a script again for erfa,being honest I haven't a clue what im doing ,when on the first 3 my results were tsh 0.1 and t4 15.5 ,thanx everybody x

[Heloise in reply to fion]

Was it a matter of money that you stopped what seems like an excellent program?

Erfa contains both T4 and T3. When you stopped it, you were increasing your T4 and no T3 unless you were taking the 20 mcg. of T3 separately. You have to remember that T3 is the active part of thyroid hormone which effects you will feel rather than stored T4 which may or may not become T3.

[fion in reply to Heloise]

Yes just money but got another script,was still talking t3

[Clarebear]

I had the horrible symptoms above whilst increasing my Armour dose, which so far has taken me nearly 18 months. Things really improved for me when I adopted the CT3M last June, but even so it has been a really slow process. Your TSH looks a bit high for someone on a medication containing T3 - I need my TSH to be suppressed to < 0.02, above mid-range fT4 and top of the range fT3.

Are you able to see one of the doctors on the TUK list to guide you? Sorry you feel so awful. xxx

[fion in reply to Clarebear]

I've to go back and see Dr s ,but It's Money as asualx

[Clarebear in reply to fion]

Can you speak to his secretary on the phone for advice? xx

[Muffy]

Have you had your Vit B12 tested? Sounds as though that would be a good idea and remember the blood tests don't always show the seriousness of the problem, just like with hypothyroidism!

[baligirl]

I have being diagnosed with Hashimotos after a long time pushing for the antibody test. I've been experiencing all sorts of crazy symptoms for 2 years aswell. Its such a horrible place to be- dizzy, numbness/weakness in limbs, tingling in hands and feet and at times feeling very ill. I don't mean to frighten you but it might be sensible to get checked out by a neurologist. I'm actually concerned about having ms and have had 4 scans now to try and pinpoint the problem. Thankfully nothing nasty has shown in the scans but am still unable to totally cross ms off the list as a few people have to wait a long time before things show up. Push for an mri of the brain and spinal cord. word of warning. don't google ms as you will really start working yourself up. just go to the pros. Don't let your gp fob you off. it is your right to get a referral - I was told that by a friend who's a gp.

[Clarebear in reply to baligirl]

I too was worried that I had MS or a brain tumour due to the tingling, dizziness and headaches etc. My endo suggested an MRI for reassurance and nothing was found.

In my case those symptoms were definitely thyroid related - now that I am optimally medicated on 3 grains of Armour I don't have them anymore xx

[baligirl in reply to Clarebear]

Wow that's wonderful!! The specialists I see poo poo armour and not to go down that road. although my tsh and t4 are within the range now i'm just getting worse. hmm i wonder if i should give armour a whirl!?

[baligirl]

ps. sorry i forgot to say by thyroid is totally under control now (I was only slightly under). The Endos at St Marys (who are v good by the way - I see Dr Cox) have said they don't think the thyroid is causing all these problems.

[lizzie1]

I have all your symptoms and am scared to death. Could not tolerate levo so am now on 1 grain Erfa.Thought initially it was helping my balance problems but have felt so very ill this week. Sitting here crying whilst typing. I have tingling, vibrating feelings down legs, balance isues and now feel like I cant swallow. This will be my 5th year like this and I feel sometimes I cant carry on feeling so ill. But we plod on dont we!

The private doc has had me on 1 grain for 3 weeks and I dont see him for another 2 weeks so I think i will up the dose myself. Cannot tolerate living like this.I worry its is MS, I had a MRI 3 years ago and it was clear but most of my symptoms seem neuro.

Its so very very frightening.

[fion in reply to lizzie1]

What do you mean when u can't tolerate levo x

[lizzie1 in reply to fion]

Got awful headaches on levo that would last all day. My TSH has only got to a lofty 6.76 at its worst so I keep telling myself that these symptoms have to be something neuro and ghastly.

Have lost my job due to this 'condition'. Just want to be me again.

[baligirl in reply to lizzie1]

Oh Lizzie I'm so so sorry. I can't imagine how you've been coping for 5 yrs. I'm going nuts and its only been 2 yrs. whats painful is when friends start pulling away because you can't go out as much:-(((. Its a v lonely place to be.

I think the worst thing is not knowing whats wrong - limboland hell. You should definately have another scan (brain and the whole of the spine) and make sure you are seen by an ms specialist - not just a general neuro. I've just been referred to the National Hospital of Neurology which is the leading hospital in the UK. They don't have a long waiting list (told I will be seen within a month) so perhaps get your gp to send you there. Make sure they do the ms protocall scan. I'm told that sometimes symptoms can just ebb away....i've had sooo many bloodtests but nothing is showing as irregular apart from high peroxidase antibodies.

Have you looked into being checked out for conditions that mimic ms? Lymes disease is one of them. I've been tested 2x but the result was negative. That can cause lots of neuro symptoms.

As you know anxiety can also cause lots of neuro symptoms. Hard to keep the anxiety down of cause when you don't know what the hells going on!! I wud recommend taking up meditation and yoga/tai chi if you havn't already started. Learning how to breathe is essential.

[baligirl in reply to baligirl]

ps. i also lost my job and was told it was all in my head!

[baligirl in reply to baligirl]

make sure your taking a good quality (solgar) omega, vit D, Zinc and B12. All v important for the nervous system. I see a private nutritionist to get the zinc and omega levels tested as you can't get them done on the nhs.

[lizzie1 in reply to baligirl]

Thanks for your message baligirl.

When I had the mri scan they did nerve conduction tests and they came back normal so they ruled out ms. Have had the nhs test for Lyme. This test is not worth the paper it is wriiten on. There is a US lab which tests for Lyme and I know that you can get your blood fed ex'ed out there for accurate testing. Got another Neuro app in August.

My anxiety goes through the roof.

I have throglobulin antibodies and a slightly raised tsh so I know something thyroid is going on.My TSH was 5 even when on levo. Whether my thyroid can cause me this amount of neuro symptoms is another question.

My doctor cant seem to understand my quest for finding out what is wrong. I think he thinks I should just live like this. Thats just the point though, I am existing not living.

Apologies Fion did not mean to hijack your thread! x

[baligirl in reply to lizzie1]

Yes apologies Fion for hijacking your thread!!

Gt you are seeing another neuro. I too had normal nerve conduction tests. The thing is with ms for some people it takes a while to show up in scans. mris are v good but not fullproof.

I too have a thyroid issue (hashimotos - raised peroxidise antibodies) but 2 x endos have said my symptoms are not thyroid related. Its true you can get dizzy/tingling symptoms with a thyroid prob so yours may well be down to the thyroid. as we all know even if your thyroid bloods look normal you can still have symptoms. perhaps try playing around with your diet. B12, selenium, iron I'm told are essential in the thyroid function. I even tried removing gluten from my diet - they symptoms seemed to calm down for a bit but then just came back so i've given up with that.

Thanks for the info on lymes. i've mentioned to several specialists (including the Tropical Disease Hospital in London) re. inaccurate testing for lymes. they always roll their eyes at that and said the nhs testing is good (lab in Southampton). hmm - i know theres a lab in the US but it costs around £500 to get the test!!!! I'm going to speak to the Hospital of Neurology about it.

I've worked my way through 5 gps now!! Finally i've got lucky and found a wonderful 'old school' type gp who is smart, understanding and prepared to stick his neck out for me. Yeah i've found too many of them can't understand the quest to find out whats wrong. I too am just existing and feel all my dreams/future has been snatched away. I will not give up though and neither should you

[baligirl in reply to baligirl]

a specialist in post viral conditions the other day suggesed i take a look at this website - functional neurological symptoms. Hmm implies its all in the mind!!

neurosymptoms.org/

[Clarebear in reply to lizzie1]

Hi Lizzie - try not to worry - it does just sound like you need an increase - symptoms are known to come back with a vengeance if you don't increase quickly enough. I think it is a good sign that you felt better to start with. As you know most of my symptoms were neuro too. xxxx

[fion]

I must admit my life has been a complete nightmare since being diagnosed x

[kimbo in reply to fion]

Hi Fion I am in exactly the same position as you are, it's a nightmare has robbed me of my life too since being diagnosed 13 years ago, I increase my levo back to 112 last night and the panics are worse today than yesterday, my tsh is 0.1 and ft4 20 don't know what's going on but I think it's the levo, also I have low cortisol and think I had ths before goin on levo all them years ago.

[Zabby]

In addition to sorting out your thyroid it might be worth looking into hyperventilation because that can cause tingling, dizziness and emotional feelings. There's lots of stuff about it on the web and websites about the Buteyko Breathing Method often explain the physiological stuff behind it quite well. I had an undiagnosed underactive thyroid for years and had terrible anxiety, breathlessness, vertigo, etc. I started doing Buteyko and felt a lot better (you can have a clearing reaction at first, so watch out for that), and then felt even better when the thyroid problem was treated. Also, as someone already mentioned, I believe B12 deficiency can cause similar problems. If you get that tested then come back and post the results because they need to be quite high in the range. Good luck!

[leaf1]

All sounds familer!

Vit D helped my tingling and vibrating legs and feet. T3 does take a momment for the body to get used to it again. dont think I could take "20mcg" that would go for my heart rate. That is one of the reasons the gps dont like it. (took about 3 months for me to feel ok on 5mcg!?

I am hashi, Weighing about 11 stone I am on 10mcg now down to 50mcg of T4 although in the winter I was taking 75 on alternatiove days. I cant take much t4 as it gives me head aches etc and genearly makes me feel "toxic"? Lost my ability to be consistant n my work so had to stop my business. some days not fit to be in charge of anything more complicated than a wheel barrow, let alone hold a conversation!

Intrestingly tthe Gp who finally tested me for it after years of hell, was going to medicate me without knowing my T4 levels.... and if I hadnt insisted he knew how much I needed he ould of over medicated me. and that would of been fine for about 3 days or so then I would of felt terrible!

Hope you find resolve soon